CCSVI without success?: numbers in statistic do not lie

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby 1eye » Tue Apr 05, 2011 9:44 am

I had a heart test that involved radioactive dye and used the average of large numbers of images to better define ejection fraction. MRI uses only one image per slice. I wonder if averaging over multiple images of the same slice would be able to reduce the effects of movement. You might not be able to use dye the same way as the heart scan used radio-dye, but there might be some way to do this...
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Postby Rici » Tue Apr 05, 2011 3:06 pm

Medical ethics in practice.
Yesterday I had a long meeting with the medical director of the Chirugical Clinic in Medicover Hospital in Warsaw, Poland (Doz. Maciej Kielar) about the
ethic component of healing medicine. Doz. Kielar is strongly of the opinion, that any patient deserves the right to be diagnosed exactly and to receive also an exact assessment of his/her situation after the diagnose.

This means also that the patient may receive a denial of CCSVI treatment if the diagnosic picture is such that the treatment is not helpful or too risky. The patient - according to Doz. Kielar - accepts this verdict knowing finally what the clinical status of the own condition really is and why the treatment is denied.

I agree with Doz. Kielar about the fact that a medical reason for any treatment MUST be present, otherwise patients are "treated" like "earning machines" for the unscrupulous clinic.
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Rici
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Postby Liberation » Fri Apr 08, 2011 4:39 am

Rici wrote:
I agree with Doz. Kielar about the fact that a medical reason for any treatment MUST be present, otherwise patients are "treated" like "earning machines" for the unscrupulous clinic.
Regards
Rici

I fully agree, Rici. A month ago I had an appointment with one doctor for CCSVI operation, but I got flu and I cancelled it. Before doing so, I called the doctor and asked him about it, but I was told that I can go for the operation, no problem if I have flu, high temperature, sneezing, coughing. In my country doctors had a different opinion, if it is not an emergency operation, I was told operation with such condition that involves even long, tiring flight should be cancelled. ...You probably know what is the real cost of such operation in Poland, so you can easily do the math. :)
Last edited by Liberation on Mon Apr 18, 2011 5:15 am, edited 1 time in total.
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Postby DrCumming » Fri Apr 08, 2011 11:14 am

drsclafani wrote:
DrCumming wrote:fixed image link

expiration imaging was sal's idea. but i have seen this happen on several patients now. so, it may not be the best way to image the azygous.

in this case, I did expiration imaging, followed by ivus which showed no abnormality, and then did the imaging at full inspiration.


mike
ideas are ideas. I throw out a lot of them. Not all pan out. Expiratory phase azygography didnt pan out. o, well.

i tend to first do end inspiration in the azygous for two reasons
1. less subtraction artefact for some reason
2. better distension of the azygous

Drs Zamboni and Galleoti often used the degree of reflux on the venogram to diagnose what they called subtle irregularities (webs). I have a great deal of difficulty seeing them, as do others. IVUS sometimes shows subtle sound reflections in the vein but i do not know what they represent.

IVUS definitely has shown abnormal valves in the arch that are not visible on Azygous venography tho.

The findings are much more difficult to analyze in the chest compared to the neck. Why? because there is constant motion during the chest venogram that we can generally avoid in the neck. You can stop breathing, but you cannot stop beating (the heart)


i agree, ivus seems to be the best way to image the azygous. and probably the jugulars as well. still, i am occasionally disappointed with how hard it can be to see the valve leaflets on ivus when they are easy to see on conventional us.

btw, not faulting you suggestion. we are all learning with every procedure we do. and there is still much to be learned.
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Postby Rici » Fri Apr 08, 2011 3:39 pm

Liberation wrote:
Rici wrote:
I agree with Doz. Kielar about the fact that a medical reason for any treatment MUST be present, otherwise patients are "treated" like "earning machines" for the unscrupulous clinic.
Regards
Rici

I fully agree, Rici. A month ago I had an appointment with one doctor for CCSVI operation, but I got flu and I cancelled it. Before doing so, I called the doctor and asked him about it, but I was told that I can go for the operation, no problem if I have flu, high temperature, sneezing, coughing. In my country doctors had a different opinion, if it is not an emergency operation, I was told operation with such condition that involves even long, tiring flight should be cancelled. Rici, you are right some doctors consider us as a cash machine. You probably know what is the real cost of such operation in Poland, so you can easily do the math. :)
My doctor told me that always be leary when money is involved in a medical treatment. :)

The Medicover in addition a few thousand even cheaper than in Euromedic.
Regards
Rici
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Postby Reytan » Tue Apr 12, 2011 10:25 pm

Rici wrote:Medical ethics in practice.
Yesterday I had a long meeting with the medical director of the Chirugical Clinic in Medicover Hospital in Warsaw, Poland (Doz. Maciej Kielar) about the
ethic component of healing medicine. Doz. Kielar is strongly of the opinion, that any patient deserves the right to be diagnosed exactly and to receive also an exact assessment of his/her situation after the diagnose.

This means also that the patient may receive a denial of CCSVI treatment if the diagnosic picture is such that the treatment is not helpful or too risky. The patient - according to Doz. Kielar - accepts this verdict knowing finally what the clinical status of the own condition really is and why the treatment is denied.

I agree with Doz. Kielar about the fact that a medical reason for any treatment MUST be present, otherwise patients are "treated" like "earning machines" for the unscrupulous clinic.
Regards
Rici


Rici I am so glad you managed to find a hospital where we are treated with respect and dignity. It is nice to know you are in a place where money is not more important than your well being.
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Postby MegansMom » Sat Apr 16, 2011 6:15 pm

DrCumming wrote:Actually, most patients do not have azygous lesions. Simka's presentation says only 5%. My experience using both venography and IVUS is a slighter high - need to look to give an exact number.


I thought that Zamboni found an affected Azygos in 86% of the patients in the original study? Is this not true? Did Simka find a low number?

Couldn't the location , degree of stenosis, degree of reflux, percent and extent of cerebral hypoxia, degree of turbulence (sheer stress interruption), Degree of cerebral hypoglycemia all contribute to the specific signs & symptoms exhibited by MS /CCSVI PATIENTS.

My daughter had an almost completely blocked Azygos and a partially blocked Left IJV. this would force the brain venous outlet flow to flood the Right IJV. I find this is very significant as less than 1 month prior to her venoplasty she had profound right facial weakness. Could edema or pressure on her right facial nerve have led to her facial paralysis? I wonder?
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby drsclafani » Sat Apr 16, 2011 11:31 pm

DrCumming wrote:
drsclafani wrote:
DrCumming wrote:fixed image link

expiration imaging was sal's idea. but i have seen this happen on several patients now. so, it may not be the best way to image the azygous.

in this case, I did expiration imaging, followed by ivus which showed no abnormality, and then did the imaging at full inspiration.


mike
ideas are ideas. I throw out a lot of them. Not all pan out. Expiratory phase azygography didnt pan out. o, well.

i tend to first do end inspiration in the azygous for two reasons
1. less subtraction artefact for some reason
2. better distension of the azygous

Drs Zamboni and Galleoti often used the degree of reflux on the venogram to diagnose what they called subtle irregularities (webs). I have a great deal of difficulty seeing them, as do others. IVUS sometimes shows subtle sound reflections in the vein but i do not know what they represent.

IVUS definitely has shown abnormal valves in the arch that are not visible on Azygous venography tho.

The findings are much more difficult to analyze in the chest compared to the neck. Why? because there is constant motion during the chest venogram that we can generally avoid in the neck. You can stop breathing, but you cannot stop beating (the heart)


i agree, ivus seems to be the best way to image the azygous. and probably the jugulars as well. still, i am occasionally disappointed with how hard it can be to see the valve leaflets on ivus when they are easy to see on conventional us.

btw, not faulting you suggestion. we are all learning with every procedure we do. and there is still much to be learned.


Mike, two more valvular stenoses of the azygous picked up with IVUS with normal venograms this weekend
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Postby drsclafani » Mon Apr 18, 2011 4:53 am

DrCumming wrote:fixed image link

expiration imaging was sal's idea. but i have seen this happen on several patients now. so, it may not be the best way to image the azygous.

in this case, I did expiration imaging, followed by ivus which showed no abnormality, and then did the imaging at full inspiration.


Expiration was Zamboni's idea. He was thinking that end expiration would maximize the thoracic pump and get optimum flow. I think that is correct.

however i do the jugulars in end expiration but the azygous in inspiration. The reason is that I find that there is more motion on end expiration in the chest, the images are poorly registered and i get a better picture in inspiration.

i too have a low incidence of abnormal azygous veins, but as i get better with IVUS I am finding more subtle valve stenoses in the craziest places in the azygous. In 3 or 9 patients treated this last week, ivus showed a valvular stenosis that was not seen by venography.
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Postby drsclafani » Mon Apr 18, 2011 4:58 am

Rici wrote:Medical ethics in practice.
Yesterday I had a long meeting with the medical director of the Chirugical Clinic in Medicover Hospital in Warsaw, Poland (Doz. Maciej Kielar) about the
ethic component of healing medicine. Doz. Kielar is strongly of the opinion, that any patient deserves the right to be diagnosed exactly and to receive also an exact assessment of his/her situation after the diagnose.

This means also that the patient may receive a denial of CCSVI treatment if the diagnosic picture is such that the treatment is not helpful or too risky. The patient - according to Doz. Kielar - accepts this verdict knowing finally what the clinical status of the own condition really is and why the treatment is denied.

I agree with Doz. Kielar about the fact that a medical reason for any treatment MUST be present, otherwise patients are "treated" like "earning machines" for the unscrupulous clinic.
Regards
Rici


Rici
i understand from many of your posts that you are very dissatisfied with your treatment at other clinics. However i think your statements about "earning machines" is slanderous and unfounded. I have worked with people you are upset with and i am not of the opinion that they are only doing this for money or that they are not trying to get quality.

we should be respectful of trailblazers. unfortunately sometimes their ideas are incorrect but they show courage to act while others sit back, come into the situation llater and then criticize.

i also have treated hypoplasias in the hope of successful treatment, only to fail. given no one coming forward with another idea, my patients and I chose to try.

I think you should lighten up and slow down. We look forward to presentation of data from drkielar

DrS
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Postby Brainteaser » Mon Apr 18, 2011 7:58 pm

drsclafani wrote: I have worked with people you are upset with and i am not of the opinion that they are only doing this for money or that they are not trying to get quality.

I have no issue with professionals being well paid and I suspect many others would think the same. I was the third cab off the rank in Katowice after Rici and Erika. I didn't see that Drs Ludyga and Simka were treating only for money. Dr Simka is committed to CCSVI.

But emotionally I feel a little like Rici. There are not only pioneering doctors - there are also pioneering patients, and I think some of us feel that we have been left a bit high and dry by people we have put our faith in.

MS is a lonely enough gig at the best of times, but when we are not getting the assistance we believe we should, it can be a battle and a half. Additionally, our treatments stretching back a year and a half, should be cases of considerable interest to the professionals, but sadly this does not seem the case.

So I think it could be just a little inappropriate to say that someone like Rici, after all he's been through, should lighten up. Having said that, I certainly respect all you are doing Dr S, to propel CCSVI forward. Where would we be without you? The treatments you and your colleagues are providing now, are a long way from where things were a year and a half ago.
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Postby drsclafani » Wed Apr 20, 2011 10:48 pm

Brainteaser wrote:
drsclafani wrote: I have worked with people you are upset with and i am not of the opinion that they are only doing this for money or that they are not trying to get quality.

I have no issue with professionals being well paid and I suspect many others would think the same. I was the third cab off the rank in Katowice after Rici and Erika. I didn't see that Drs Ludyga and Simka were treating only for money. Dr Simka is committed to CCSVI.

But emotionally I feel a little like Rici. There are not only pioneering doctors - there are also pioneering patients, and I think some of us feel that we have been left a bit high and dry by people we have put our faith in.

MS is a lonely enough gig at the best of times, but when we are not getting the assistance we believe we should, it can be a battle and a half. Additionally, our treatments stretching back a year and a half, should be cases of considerable interest to the professionals, but sadly this does not seem the case.

So I think it could be just a little inappropriate to say that someone like Rici, after all he's been through, should lighten up. Having said that, I certainly respect all you are doing Dr S, to propel CCSVI forward. Where would we be without you? The treatments you and your colleagues are providing now, are a long way from where things were a year and a half ago.


perhaps i was too harsh

i have been accused too of being in this for the money. that i charge more than others. that i left the university to make the big bucks.

it hurts on this side too
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Postby Cece » Thu Apr 21, 2011 7:29 pm

As patients I think we go into this knowing it is a new use of an old procedure, all the details have not yet been ironed out. The feeling of being left high-and-dry may be because there is nothing more the doctor can do?

The extra costs of IVUS (both in hardware and time added on to the procedure) are part of the cost at the Brooklyn AAC. I've been excited about IVUS since around this time last year! As for Dr. Sclafani leaving the university to make the big bucks, I have been under the impression that it is the other way around, that he made a sacrifice in order to take part in this discovery.

For the sacrifices and the trail-blazing, thank you.
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Postby newlywed4ever » Thu Apr 21, 2011 7:43 pm

Cece wrote:As patients I think we go into this knowing it is a new use of an old procedure, all the details have not yet been ironed out. The feeling of being left high-and-dry may be because there is nothing more the doctor can do?

The extra costs of IVUS (both in hardware and time added on to the procedure) are part of the cost at the Brooklyn AAC. I've been excited about IVUS since around this time last year! As for Dr. Sclafani leaving the university to make the big bucks, I have been under the impression that it is the other way around, that he made a sacrifice in order to take part in this discovery.

For the sacrifices and the trail-blazing, thank you.


Agreed! And thank you for hurting for us... as we also hurt for Rici
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Postby Brainteaser » Thu Apr 21, 2011 8:11 pm

drsclafani wrote:perhaps i was too harsh
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